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My 14 year old son

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Carolyn Find out more about Carolyn
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  • My 14 year old son

    Hi all,
    I'm so glad I found this sight. I have wanted to talk to someone about this for so long! My son was born with a ventral septal defect that caused a loud murmur so an echo was ordered. They also found "a thickened wall" at that time but the VSD closed by 6 months. I continued check-ups with the cardiologist who never told me it was HCM and never told me to restrict his activity at all. When he was 8 or 9 and playing soccer on his team, I noticed he was getting so out of breath and would have to sit out for a long time to recover. I called his cardiologist and found he had quit his practice due to MS.The doctor we saw instead then told us all the bad news about HCM and put him on meds (first atenolol, now Verapamil). He also told us he couldn't play competitive sports and, worst of all, could not ride roller coasters and other rides. Well, my husband used to be in the carnival business and has recently re-entered it and they share a passion for roller coasters. Telling him he couln't play soccer was nothing compared to this! So against the dr and my wishes he still rides everything. His dad doesn't think it's "right" to restrict him now and thinks maybe the doctor is wrong in his case. He is now 14. He started gaining weight when he quit soccer and still should lose about 20 pounds. I keep hoping he will grow fast enough that the weight will even out. I know it couldn't be good for his heart. He was always extremely skinny before.
    So that's most of my story--thanks for listening! Carolyn

  • #2
    Carolyn -
    CALL ME. I am in the office now and we should get you out some information.
    I am glad you found us and hope to see you here on the board often.

    Best wishes,
    Lisa Salberg
    973-983-7429
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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    • #3
      Carolyn,

      I am glad you found us. Please read through the site, including the information parts that discuss diagnosis, treatment, etc. There is a wealth of information here. And this forum is a wonderful place for support, whether you need to vent, share, or laugh. That's why we're here. And yes, please do call Lisa.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        Carolyn, welcome to the message board. Glad you found us and hope you had a chance to talk with Lisa today. There is so much to learn and cope with and none of it is easy. As a parent, it's tough to accept the diagnosis, and the limitations are sometimes even more heartbreaking. None of it happens overnight, it's been 13 yrs since our son was diagnosed at age 7. There were so many times that I prob felt the disappointment more than he did. We've reached the point where he is disappointed at certain things, but aware enough of his limitations that he is an expert planner. He knows if he has to eliminate something or just schedule more rest the day before or after. Roller coasters were a great love of his also. He gave them up himself, after not feeling well on one. I'm not saying we showed the best judgement in letting him ride a select few, but somehow we got thru it. The skiing just had to go, and was devastating. But we got thru it. Work now on finding alternatives for him, the sooner, the better and easier. You will prob have many messages on how others have dealt with the same concerns, and no one ans is right. At least if you have suggestions, you can try some things you may not have thought of, but in the end, you will work it out in your own way. You will find lots of support here to help you and your family thru. Best wishes and let us know how things are going. Linda

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        • #5
          No Roller Coasters?

          I've not heard the no roller coasters before. Is this something we really need to be concerned about? The only reason I ask is that the only time I've ever passed out was on a roller coaster (doc didn't seem to be concerned about it). I don't ride the roller coasters because of what happened before. I think that's a question I'll need to write down for the doctor, but I'd be interested to know if anyone else's doctor has told them not to ride roller coasters.

          Amy N.

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          • #6
            Amy, you can do a search on this site for roller coasters and I know they've been addressed before. One issue is if you have an ICD. Many of the newer coasters run on humongous magnets and they might interfere with the ICD function. Other than that, I am speculating here, I think it has to do with the adrenaline rush and how that affects the heart. It might affect blood pressure too, but I'm not sure. I'm guessing here. I'm sure someone else will chime in with more info soon.

            Reenie
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

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            • #7
              Roller Coasters

              I don't ride rollercoasters anymore. The very first symptoms I ever had came within minutes of riding one. I keep forgetting to ask the doctors if I could ride them. But I figure it is so much better to listen to what my body is saying and it says, "No Roller coasters!" I do know that adrenilen seems to get in my heart and stay. I personally think the mycardial disarray keeps the stuff floating around because the cells can't "flush" well.Although I can't back it up with the Bible, I think there just may be roller cosaters in heaven for all of us who love them with these bodies but need the bodies we'll have there to ride them.
              Obstructive HCM, Pacemaker 1999, Septal Myectomy 2002

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              • #8
                roller coasters

                Thanks for all of your input. Since not everyone has heard the "no roller coasters" rule I'll explain what my son's Dr told us. He said, first of all, the cardiac warnings on amusement rides were put there because of this disease. It has to do with the gravitational forces experienced on roller coasters and a lot of other rides as well that interrupts the electrical system in the heart. I've noticed my son is beginning to cut back on some of the rides on his own but I'm not sure why. He has never had any symptoms or problems from it. I asked the Dr if it made a difference for him because he was so used to riding them and did not experience the fear that most normal people (like me) feel. He said he didn't know the answer to that. I'm nervous every time he rides one of these--I'm hoping he quits on his own. But what kind of mother am I to allow him to continue if it is this dangerous for him????? Carolyn

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                • #9
                  Could this be a reason why when I was between 13-16 and use to ride roller coasters and other "fun" rides I would spit up blood after?

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                  • #10
                    Hmmm, Don't know about the spitting up blood, but I do know that my husband started not liking coasters in his early 20's and hasn't been on one in at least 10 years, maybe more. He's 38 now. He says they make him sick to his stomach when they didn't before.
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment

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